NextBillion - An Initiative of the William Davidson Institute at the University of Michigan

Wednesday, April 1, 2015

Genetic information that could help slow disease outbreaks may be kept private by researchers out of fear of violating patients’ rights — that was one of the concerns expressed in a Nature article recently. [1]

At the height of the Ebola epidemic, the authors of the piece sequenced 99 Ebola genomes from patients in Sierra Leone. The data was immediately uploaded to the public database GenBank and led to a surge in collaborations that eventually confirmed the virus had spread from Guinea to Sierra Leone, and indicated that the outbreak was being sustained by human-to-human transmission.

But the researchers wrote of a slump in the numbers of Ebola virus genomes isolated from patients and uploaded to open data repositories after theirs in mid-2014. That’s problematic, since the open sharing of data is essential to designing effective responses to outbreaks.

The researchers argued that one of the biggest barriers to open sharing of genetic data during health crises is the lack of coherent, internationally recognised guidelines on gaining informed consent from patients. Although such data is routinely anonymised, it’s still theoretically possible to identify participants from it. So scientists might avoid sharing genetic data they collect for fear that it could be misconstrued and used to stigmatise vulnerable populations. This might have partly caused the mid-2014 slump.

The authors suggest convening an international meeting involving health agencies, governments, biosecurity experts and ethicists to discuss what guidelines for informed consent could look like in emergency situations in developing nations.

I spoke to Jantina De Vries, the chair of the ethics committee working group at Human Heredity and Health in Africa (H3Africa), an organisation that has already developed guidelines on gaining informed consent on the continent. [2] She identifies three important issues that would have to be factored into any such guidelines.